Our first World Down Syndrome Day was when Zoe was only 2 months old. At that time, our new life with our first baby had just started. We had no idea what this new life would mean; how she would change us, and what advocacy meant to us as a family. While "I could write so many things about Zoe and how Down syndrome has positively affected us, I want to focus on one thing - How Zoe changed us.
Zoe transformed us in so many ways, all for the better. We are better humans, and parents because of her. I believe our family and friends feel the same way.
Zoe gave us the gift of perspective.
What we quickly learned is, it does not matter what percentile she was on the charts, how quickly she hits a milestone, or how fast she learns to do a task. What truly matters is how you make someone feel after you meet them. This is what leaves an impression. After you spend time with Zoe, you will feel loved, happy, content, and inspired. Even just saying her name makes you smile. Zoe is three years old, yet makes you feel like you are the most special person in the world. Her eyes look at you with such love, you just know you are loved beyond measure. Even when she is upset, she forgives without hesitation. She has an innate ability to know when you need a hug. When she is excited, she makes us all want to cheer as she yells “YAY” and claps. Our favorite is when we were out in public (pre-covid) and she says “Hello “to every single person we pass and they immediately smile back and say “Hello.” No matter the emotion or situation, Zoe makes you FEEL and leaves you with that lasting impression.
Seeing these interactions have changed us. We want to leave people with a positive, lasting impression. Our perspective on how we treat people, especially those with different abilities, has changed and vastly improved because of her. We no longer shy away from engaging with those that may look and act different - we welcome them with bright smiles and enthusiastic greetings! Without Zoe, we would be stuck in the same stagnant thought process and oblivious ways.
Zoe inspires us daily. She gives our family the perfect balance. We cannot imagine life without her. A world without her or Down syndrome is just not a complete world at all."
-Ashley Bratek
Zoe transformed us in so many ways, all for the better. We are better humans, and parents because of her. I believe our family and friends feel the same way.
Zoe gave us the gift of perspective.
What we quickly learned is, it does not matter what percentile she was on the charts, how quickly she hits a milestone, or how fast she learns to do a task. What truly matters is how you make someone feel after you meet them. This is what leaves an impression. After you spend time with Zoe, you will feel loved, happy, content, and inspired. Even just saying her name makes you smile. Zoe is three years old, yet makes you feel like you are the most special person in the world. Her eyes look at you with such love, you just know you are loved beyond measure. Even when she is upset, she forgives without hesitation. She has an innate ability to know when you need a hug. When she is excited, she makes us all want to cheer as she yells “YAY” and claps. Our favorite is when we were out in public (pre-covid) and she says “Hello “to every single person we pass and they immediately smile back and say “Hello.” No matter the emotion or situation, Zoe makes you FEEL and leaves you with that lasting impression.
Seeing these interactions have changed us. We want to leave people with a positive, lasting impression. Our perspective on how we treat people, especially those with different abilities, has changed and vastly improved because of her. We no longer shy away from engaging with those that may look and act different - we welcome them with bright smiles and enthusiastic greetings! Without Zoe, we would be stuck in the same stagnant thought process and oblivious ways.
Zoe inspires us daily. She gives our family the perfect balance. We cannot imagine life without her. A world without her or Down syndrome is just not a complete world at all."
-Ashley Bratek
I'm sharing my story to give hope, inspiration, and permission to those who have, are, or will struggle with a Down syndrome diagnosis. Let yourself feel all the feels and do whatever you need to do to work through them, because one day they will fade away and adoration and love will replace them. It will be okay. It will be better than okay, because you will soon learn that love doesn't count chromosomes.
Despite prenatal screenings, we didn't know that Aiken would have Down syndrome. His birthday was the happiest and hardest day of my life. I was overwhelmed with joy and excitement to find out if we were having a boy or girl, and to finally meet this miracle we created. About an hour after he was born and an interrogation-like visit from the pediatrician, we were informed of the suspected Down syndrome diagnosis. My excitement and joy quickly turned to anger, fear, worry, disappointment, sadness, and every other emotion that happens when you are grieving. See, I was grieving the loss of the child that I thought I was going to have. I was crying. The nurse was crying. My family was crying. Everyone was crying. I felt like I had disappointed them, that this child was a disappointment. All of the thoughts ran through my head…What did I do wrong? Why him? Why us? Life will be so hard. Will we ever have our own lives back?
While my husband, Brad, struggled a bit with the diagnosis he wasn't as devastated as I was. He was able to hold it together to support me. He was my rock. He still is. Our different reactions to his diagnosis were neither right nor wrong. There's no handbook on how to feel. I could go on and on about my rollercoaster of emotions but I think my hardest moment was about two weeks after Aiken was born. I finally said out loud how I had been feeling. "I want to give him back. I feel like they gave me the wrong baby. I don't want to do this." This was my ugliest moment, but also the moment that my healing started. The moment my love of his sweet smile, tiny hands and ears, short little arms, and chubby feet replaced the sadness a bit. The moment I realized the truth is, parenthood is never what we imagine it to be. We can plan and dream but only God knows what will be. So we trust and we do the best we can.
As it turns out, having a child with Down syndrome isn't what I had imagined. It's better. It's amazing, joyful, funny, exhausting, worrisome, draining, and filled with love, like you'd think. But we are now part of a club. It’s something that parents with neurotypical children may never understand. This club gave me the most incredible friends and introduced me to people I wouldn't have known otherwise. We celebrate every milestone, no matter how small, as if you just won the super bowl (or whatever exciting reference you want to insert 😉). We appreciate doing simple things in life. Walking, giggling, holding a fork, drinking from a straw cup, and soon, running, singing, and playing peek-a-boo. We support each other and advocate for one another. We love toe gaps and brushfield spots in almond shaped eyes that sparkle like diamonds. We give advice and recommend therapists and share the shoes that work best with SMOs. We cry and laugh together because we know how fiercely we love.
It devastates me to think of how I felt at the beginning of Aiken's life. He didn't deserve for his mother to feel that way. He deserved to be celebrated and loved for the unique and wonderful human that he is. I love this child. I love watching him grow, be a big brother, read books, sing songs, climb his play set, play with friends, and listen to him tell me no. I love all of it! I love it because at the beginning I didn't know if I could feel love for him. But now I don't know how I could ever love him more.
Welcome to the best club you never knew you wanted to be a part of!"
-Mara Bell
Despite prenatal screenings, we didn't know that Aiken would have Down syndrome. His birthday was the happiest and hardest day of my life. I was overwhelmed with joy and excitement to find out if we were having a boy or girl, and to finally meet this miracle we created. About an hour after he was born and an interrogation-like visit from the pediatrician, we were informed of the suspected Down syndrome diagnosis. My excitement and joy quickly turned to anger, fear, worry, disappointment, sadness, and every other emotion that happens when you are grieving. See, I was grieving the loss of the child that I thought I was going to have. I was crying. The nurse was crying. My family was crying. Everyone was crying. I felt like I had disappointed them, that this child was a disappointment. All of the thoughts ran through my head…What did I do wrong? Why him? Why us? Life will be so hard. Will we ever have our own lives back?
While my husband, Brad, struggled a bit with the diagnosis he wasn't as devastated as I was. He was able to hold it together to support me. He was my rock. He still is. Our different reactions to his diagnosis were neither right nor wrong. There's no handbook on how to feel. I could go on and on about my rollercoaster of emotions but I think my hardest moment was about two weeks after Aiken was born. I finally said out loud how I had been feeling. "I want to give him back. I feel like they gave me the wrong baby. I don't want to do this." This was my ugliest moment, but also the moment that my healing started. The moment my love of his sweet smile, tiny hands and ears, short little arms, and chubby feet replaced the sadness a bit. The moment I realized the truth is, parenthood is never what we imagine it to be. We can plan and dream but only God knows what will be. So we trust and we do the best we can.
As it turns out, having a child with Down syndrome isn't what I had imagined. It's better. It's amazing, joyful, funny, exhausting, worrisome, draining, and filled with love, like you'd think. But we are now part of a club. It’s something that parents with neurotypical children may never understand. This club gave me the most incredible friends and introduced me to people I wouldn't have known otherwise. We celebrate every milestone, no matter how small, as if you just won the super bowl (or whatever exciting reference you want to insert 😉). We appreciate doing simple things in life. Walking, giggling, holding a fork, drinking from a straw cup, and soon, running, singing, and playing peek-a-boo. We support each other and advocate for one another. We love toe gaps and brushfield spots in almond shaped eyes that sparkle like diamonds. We give advice and recommend therapists and share the shoes that work best with SMOs. We cry and laugh together because we know how fiercely we love.
It devastates me to think of how I felt at the beginning of Aiken's life. He didn't deserve for his mother to feel that way. He deserved to be celebrated and loved for the unique and wonderful human that he is. I love this child. I love watching him grow, be a big brother, read books, sing songs, climb his play set, play with friends, and listen to him tell me no. I love all of it! I love it because at the beginning I didn't know if I could feel love for him. But now I don't know how I could ever love him more.
Welcome to the best club you never knew you wanted to be a part of!"
-Mara Bell
"It’s possible that you’ve just received a Down syndrome diagnosis, or maybe your doctor just suspects something right now. Either way, you are in the throes of grief, and you might be experiencing every emotion possible. It’s okay. Someone once told me, “feel each feeling, just don’t let yourself live there.” That simple sentence carried me through many dark days. Just don’t let yourself live there.
You might be googling or searching hashtags; remember to take all of those stories and images with a grain of salt. They’re a tiny snapshot of what life *might* be like for you. Because every story is different. Every child is different. Every outcome is different. What isn’t different is the love and joy our children bring to our lives. Is every day easy? No. Is every day worth it? Without a doubt!
If my Maddox has taught me anything, it’s that there is joy beyond measure to be found in our children. His smile lights up a room, his hugs melt stone cold hearts, and his comedic timing is perfection! Do I hope that his path in life is smooth? Of course! Every parent wishes that for their child! However; I know that he will overcome, in his own way, in his own time. He already proves that every day of his life.
You might be feeling guilty. You might feel like you did something wrong, didn’t take the right prenatal, or maybe you even worry that this is karma. Grief is weird like that. Let me just tell you, you did nothing wrong, and if this is karma, it’s the best possible kind. You cannot imagine the reward and treasure you are about to receive.
You might be feeling like you aren’t strong enough or equipped enough, but I promise, you are because this baby will make you that way. You will learn what it means to be present, to love deeply, to celebrate the little things, and to show up when people need it most. You have just joined the most incredible family who will cheer for you, hold you close, and give you the dose of reality you always need. We truly are #theluckyfew. I hope that I can be one of the first to say, welcome and embrace you and your family fully!
You are the perfect mom for this child, and this child is the perfect one for you. So feel each feeling, Google all of the things if it helps you, but don’t let yourself live there. There is so much more living to do right here!"
-Michelle Dietz
You might be googling or searching hashtags; remember to take all of those stories and images with a grain of salt. They’re a tiny snapshot of what life *might* be like for you. Because every story is different. Every child is different. Every outcome is different. What isn’t different is the love and joy our children bring to our lives. Is every day easy? No. Is every day worth it? Without a doubt!
If my Maddox has taught me anything, it’s that there is joy beyond measure to be found in our children. His smile lights up a room, his hugs melt stone cold hearts, and his comedic timing is perfection! Do I hope that his path in life is smooth? Of course! Every parent wishes that for their child! However; I know that he will overcome, in his own way, in his own time. He already proves that every day of his life.
You might be feeling guilty. You might feel like you did something wrong, didn’t take the right prenatal, or maybe you even worry that this is karma. Grief is weird like that. Let me just tell you, you did nothing wrong, and if this is karma, it’s the best possible kind. You cannot imagine the reward and treasure you are about to receive.
You might be feeling like you aren’t strong enough or equipped enough, but I promise, you are because this baby will make you that way. You will learn what it means to be present, to love deeply, to celebrate the little things, and to show up when people need it most. You have just joined the most incredible family who will cheer for you, hold you close, and give you the dose of reality you always need. We truly are #theluckyfew. I hope that I can be one of the first to say, welcome and embrace you and your family fully!
You are the perfect mom for this child, and this child is the perfect one for you. So feel each feeling, Google all of the things if it helps you, but don’t let yourself live there. There is so much more living to do right here!"
-Michelle Dietz
What a journey! I was 43 years old when I found out that I was pregnant for the first time. We were in the midst of building a new home ourselves, and I was just about to start a new job! What could be more stressful? How about learning the baby girl I was carrying had Down syndrome?
Then came the delightful questions of whether we wanted to terminate the pregnancy – What? No! Let’s add that she had a rare heart condition and probably wouldn’t make it to term. It was a tough way to go through a pregnancy. That’s for sure. But we put it in the hands of the man upstairs, and He apparently had another plan.
And 18 years ago, Katie Erin was delivered (C-section of course!). They warned us she may be bluish from lack of oxygen due to her heart condition. They said they may have needed to whisk her off to the NICU. When they put her on my chest, all I could say was, “she’s so pink!”. Believe me, our kiddos are so strong, brave, and resilient. The first few years were tough with heart surgery at 4 months and a few years of oxygen wearing.
But now, at 18, she is a senior in high school, plays baseball for the Miracle League, plays Bocce at school, and was homecoming queen. She brings joy to everyone she meets. Oh, she can be difficult and stubborn, for sure! But what I love is that she never stays mad, and never holds grudges. Whatever argument that took place is in the past.
Her smile just melts my heart with those smiling Irish eyes. Every milestone met was a celebration of pride and joy. We have met so many supportive and loving families along the way, as well as awesome teachers and therapists. They are our village. We are now embarking on the next part of the journey in future planning, but have no doubt she will be working and living independently in the future. We did not choose this Down syndrome journey, but we sure do love our tour guide. Enjoy the ride!"
-Kathleen Conway
Then came the delightful questions of whether we wanted to terminate the pregnancy – What? No! Let’s add that she had a rare heart condition and probably wouldn’t make it to term. It was a tough way to go through a pregnancy. That’s for sure. But we put it in the hands of the man upstairs, and He apparently had another plan.
And 18 years ago, Katie Erin was delivered (C-section of course!). They warned us she may be bluish from lack of oxygen due to her heart condition. They said they may have needed to whisk her off to the NICU. When they put her on my chest, all I could say was, “she’s so pink!”. Believe me, our kiddos are so strong, brave, and resilient. The first few years were tough with heart surgery at 4 months and a few years of oxygen wearing.
But now, at 18, she is a senior in high school, plays baseball for the Miracle League, plays Bocce at school, and was homecoming queen. She brings joy to everyone she meets. Oh, she can be difficult and stubborn, for sure! But what I love is that she never stays mad, and never holds grudges. Whatever argument that took place is in the past.
Her smile just melts my heart with those smiling Irish eyes. Every milestone met was a celebration of pride and joy. We have met so many supportive and loving families along the way, as well as awesome teachers and therapists. They are our village. We are now embarking on the next part of the journey in future planning, but have no doubt she will be working and living independently in the future. We did not choose this Down syndrome journey, but we sure do love our tour guide. Enjoy the ride!"
-Kathleen Conway
To the New Parents of a Child with Down syndrome,
You don’t know me yet, but I’m pretty sure I know you.
You’re the ones holding that itty-bitty baby and wondering what comes next. Your mind is racing and your heart is torn: one half is with your child—this beautiful, perfect, wonderfully-made child—and the other is with your expectations of what you thought this was going to be. The expectations you’d built up in your mind and heart. Expectations you didn’t even realize you had.
I can see it in your eyes.
It’s okay….I had them, too.
And you’re standing on what feels like a precipice. One that separates you from what came before and what’s happening now. And I know what it feels like.
It feels like you’re staring out into the vast unknown and you just don’t have it in you to jump. I know all of this because I, like you, have been there, too. And so, first I must say this: Yes. You. Can.
I am also here to tell you that beyond that vast unknown …in the darkened corners you cannot yet see, there is an army waiting for you. But they do not seek to harm. No….they are your fellow warriors! They are other parents on this journey, family members, friends, therapists, doctors, and so many more. They will fight with you and for your child. There is power, hope, and strength in this army!
So with their help, you’ll take your first, timid steps into this world. And you’ll be scared beyond belief and feel like you might drop at any moment. The fear can be overwhelming. Yes, fear is a powerful thing. But whatever you do, you cannot let it win.
Those first few steps are shaky and uncertain.
Because perhaps this is a path you didn’t expect. A journey you didn’t foresee. But it’s going to be okay.
Because beyond the unknown there is understanding. And just beyond that lies a life you didn’t even know could be. Not a lesser life. No!
A life of JOY.
A life of beauty.
A life of love beyond comparison.
A life where you are unafraid, bold, and free. Free to live a full life that comes from understanding, acceptance, and seeing things for the first time, through a different lens. And your child will do all of this. They will do all of this and more, just by being exactly who they are. Fearfully and wonderfully made. Perfectly made for you.
You can do this.
With love,
Nici Wooding
( A mom and fellow warrior)
You don’t know me yet, but I’m pretty sure I know you.
You’re the ones holding that itty-bitty baby and wondering what comes next. Your mind is racing and your heart is torn: one half is with your child—this beautiful, perfect, wonderfully-made child—and the other is with your expectations of what you thought this was going to be. The expectations you’d built up in your mind and heart. Expectations you didn’t even realize you had.
I can see it in your eyes.
It’s okay….I had them, too.
And you’re standing on what feels like a precipice. One that separates you from what came before and what’s happening now. And I know what it feels like.
It feels like you’re staring out into the vast unknown and you just don’t have it in you to jump. I know all of this because I, like you, have been there, too. And so, first I must say this: Yes. You. Can.
I am also here to tell you that beyond that vast unknown …in the darkened corners you cannot yet see, there is an army waiting for you. But they do not seek to harm. No….they are your fellow warriors! They are other parents on this journey, family members, friends, therapists, doctors, and so many more. They will fight with you and for your child. There is power, hope, and strength in this army!
So with their help, you’ll take your first, timid steps into this world. And you’ll be scared beyond belief and feel like you might drop at any moment. The fear can be overwhelming. Yes, fear is a powerful thing. But whatever you do, you cannot let it win.
Those first few steps are shaky and uncertain.
Because perhaps this is a path you didn’t expect. A journey you didn’t foresee. But it’s going to be okay.
Because beyond the unknown there is understanding. And just beyond that lies a life you didn’t even know could be. Not a lesser life. No!
A life of JOY.
A life of beauty.
A life of love beyond comparison.
A life where you are unafraid, bold, and free. Free to live a full life that comes from understanding, acceptance, and seeing things for the first time, through a different lens. And your child will do all of this. They will do all of this and more, just by being exactly who they are. Fearfully and wonderfully made. Perfectly made for you.
You can do this.
With love,
Nici Wooding
( A mom and fellow warrior)
"Congrats and welcome to the club. You might not know this, but you are now one of The Lucky Few. It might not feel like a good club to be a part of right now but as time goes on you will see that it is one of the best clubs to be a member.
I also want to tell you that I felt all of the feelings that you might be feeling when my daughter Emily was born 12 years ago. She was my second baby almost 2 years after the first one. She came quickly and the feeling was pure bliss…another girl. I envisioned my 2 girls being the best of friends and doing so many wonderful things together. But the excitement and joy soon changed as we were told she had Down syndrome. All those dreams I had faded away and I was now filled with fear, uncertainty, sadness, anger and grief. I felt this way for a year, but I tucked them away and never let anyone know. I felt very alone and ashamed. I didn’t want anyone to judge me or to think I was a bad mom or that I didn’t love Emily. Because I loved her so very much. And when I finally shared my feelings many years later, I realized that I was not alone. We have all been there. We have all felt those feelings. So please, allow yourself to feel and to grieve. Ask for help. Reach out to others in the Down syndrome community because we have been there. We know exactly what you are feeling. You are not alone.
We went to our very first Buddy Walk in 2008. The only people that joined us was my mom and my aunt. I needed to see what it was about without a large group of family and friends. I needed to decide if I could handle it. I was hesitant to join this club. I remember seeing lots of smiles and welcoming faces. It felt good but I was still a little scared. So, the following year I was ready to be a part of this club that I wasn’t expecting to join. We invited all of our family and friends. We made t-shirts and had a huge tail gate party after the walk. We were surrounded by over 100 of our friends and family. It was a celebration. At that time, I realized that Emily was going to make a difference. She was going to be a huge influence on everyone in her life. She was going to teach us a lot. She was going to make us all better people.
The past 12 years have not been easy. It has been filled with lots of doctor appointments and therapies. It has had many tears and frustrations. But it has also been filled with so many accomplishments and joy. Emily has taught me resilience and determination. She has taught me how to live in the moment. She has shown me what pure joy looks like and what it feels like to have it. She has taught me kindness and compassion. She has taught me to not judge others and how to put myself in someone else’s shoes. I am a better person because of her. I am so grateful that I have her in my life. It’s not easy but it is so worth it.
Remember how I mentioned that all those dreams faded away. Well, I am happy to say that she has accomplished every single one of them along with many more that I never imagined. So, don’t give up on those dreams. Anything is possible. I know Emily will have the life she wants and deserves. And the world is a better place having her in it."
-Jamie Karlovits
I also want to tell you that I felt all of the feelings that you might be feeling when my daughter Emily was born 12 years ago. She was my second baby almost 2 years after the first one. She came quickly and the feeling was pure bliss…another girl. I envisioned my 2 girls being the best of friends and doing so many wonderful things together. But the excitement and joy soon changed as we were told she had Down syndrome. All those dreams I had faded away and I was now filled with fear, uncertainty, sadness, anger and grief. I felt this way for a year, but I tucked them away and never let anyone know. I felt very alone and ashamed. I didn’t want anyone to judge me or to think I was a bad mom or that I didn’t love Emily. Because I loved her so very much. And when I finally shared my feelings many years later, I realized that I was not alone. We have all been there. We have all felt those feelings. So please, allow yourself to feel and to grieve. Ask for help. Reach out to others in the Down syndrome community because we have been there. We know exactly what you are feeling. You are not alone.
We went to our very first Buddy Walk in 2008. The only people that joined us was my mom and my aunt. I needed to see what it was about without a large group of family and friends. I needed to decide if I could handle it. I was hesitant to join this club. I remember seeing lots of smiles and welcoming faces. It felt good but I was still a little scared. So, the following year I was ready to be a part of this club that I wasn’t expecting to join. We invited all of our family and friends. We made t-shirts and had a huge tail gate party after the walk. We were surrounded by over 100 of our friends and family. It was a celebration. At that time, I realized that Emily was going to make a difference. She was going to be a huge influence on everyone in her life. She was going to teach us a lot. She was going to make us all better people.
The past 12 years have not been easy. It has been filled with lots of doctor appointments and therapies. It has had many tears and frustrations. But it has also been filled with so many accomplishments and joy. Emily has taught me resilience and determination. She has taught me how to live in the moment. She has shown me what pure joy looks like and what it feels like to have it. She has taught me kindness and compassion. She has taught me to not judge others and how to put myself in someone else’s shoes. I am a better person because of her. I am so grateful that I have her in my life. It’s not easy but it is so worth it.
Remember how I mentioned that all those dreams faded away. Well, I am happy to say that she has accomplished every single one of them along with many more that I never imagined. So, don’t give up on those dreams. Anything is possible. I know Emily will have the life she wants and deserves. And the world is a better place having her in it."
-Jamie Karlovits
"When I was pregnant in 2018, a new mom friend told me within the first 5 minutes of meeting her, “this is the best club I never knew I wanted to be a part of.” Although I heard her the words she shared, I did not necessarily understand what she meant by it until I had Holland a few months later. Looking back on this time, I am not even sure if she realizes the impact it had on me. I will never forget that moment. There are so many positive things about the Down syndrome community. When I count my blessings - my friends are always included right at the top. I have met so many incredible and inspiring people on this journey and I am grateful to have the opportunity to continue to meet more as Holland grows up. We have laughed together and cried together. We have seen each other through ups and downs. We have given a shoulder to lean on and lent a listening ear. We celebrate each milestone and victory with all our kids collectively even when timing may be different. And I know when I need these friends, they are there. Down syndrome may be the bond that connected us, but the love we share for each other keeps us going strong. I will treasure these friendships forever and look forward to making more friends in the future."
-Erin Kozy
-Erin Kozy
"Welcome! Welcome to the community. This is a community of understanding, support, resources, and especially love. Here you will find all the tools to help you navigate these unfamiliar waters. The best part is that no matter where you are in your journey, someone else has already been there. They will help guide and steer you in the right direction.
Get ready for the fun! It’s non-stop! Calendar shoots, the Buddy walk, World Down Syndrome Day, Idlewild Day and so much more. We hope that you like blue and yellow, because those will now be your favorite colors. Besides your baby's birthday, March 21 will be your second favorite day on the Calendar. It’s the day we celebrate our heroes.
I entered this journey and community 8 years ago. I’ve watched it grow bigger and bigger. I couldn’t imagine not having this tribe along the way. It’s truly something special. Get ready for endless hugs, kisses and love! Our kiddos throw so much of that around that they make Cupid look small. We can’t wait to meet you!"
-Love, Samantha Brown
Get ready for the fun! It’s non-stop! Calendar shoots, the Buddy walk, World Down Syndrome Day, Idlewild Day and so much more. We hope that you like blue and yellow, because those will now be your favorite colors. Besides your baby's birthday, March 21 will be your second favorite day on the Calendar. It’s the day we celebrate our heroes.
I entered this journey and community 8 years ago. I’ve watched it grow bigger and bigger. I couldn’t imagine not having this tribe along the way. It’s truly something special. Get ready for endless hugs, kisses and love! Our kiddos throw so much of that around that they make Cupid look small. We can’t wait to meet you!"
-Love, Samantha Brown
Dear Childhood Self,
You remember so well growing up with your brother Das. You and he were so close in age, and you both always seemed to enjoy being together. You didn’t realize that there was anything different about Das at all until someone else pointed it out. You didn’t know what to do with that information – it didn’t make sense! You spoke with your parents, and they confirmed that Das indeed had some special challenges that you did not have. You became so upset because you never realized that was why Das struggled so much more to learn things than you did. You just thought that’s how all brothers were! It just always seemed to take Das a little bit longer to be able to pick up the games you were playing, but he always did! All through his education, you learned patience by watching him struggle, persevere, and then ultimately accomplish what he wanted to do. And then you saw the unbridled joy in his face when he finally got to say “I did it, Kis-ow!”
As you got older, you started to wonder about the fairness of it all. Why did Das have to struggle with so many things that came so much easier to you? Why would God make a child have to go through all that? Your struggles reached deep into your core and rocked you spiritually. You began to doubt in God’s existence altogether for so many years. Then, in what could only be described as a miracle, you began to see all the qualities that were always there but taken for granted. You began to see Das’ ability to love everyone unconditionally. You began to personally experience Das’ very real forgiveness whenever you messed up. You found that Das resembled God more than any other person you had ever met. It was then that you realized that you were the one born with one chromosome too few, and Das was born with just the right amount. You realized that God’s version of perfection was different than your own!
Hang in there, Kishore! God’s got quite a roller coaster ahead of you, and the exhilarating time is on the way! You are going to get a dream job where you will be able to indirectly give back to Das by directing a clinic for thousands of children with Down syndrome. You are going to impact the lives of not only those children but also their families and siblings, in ways that you could never have dreamed. You’re going to become President of the National Down Syndrome Congress and impact families all over the country and beyond. And after some struggles of your own along the way, you will hear yourself say, “We did it, Das!”
Sincerely,
Your Adult Self"
-Dr. Kishore Vellody, Medical Director, Down Syndrome Center of Western PA
You remember so well growing up with your brother Das. You and he were so close in age, and you both always seemed to enjoy being together. You didn’t realize that there was anything different about Das at all until someone else pointed it out. You didn’t know what to do with that information – it didn’t make sense! You spoke with your parents, and they confirmed that Das indeed had some special challenges that you did not have. You became so upset because you never realized that was why Das struggled so much more to learn things than you did. You just thought that’s how all brothers were! It just always seemed to take Das a little bit longer to be able to pick up the games you were playing, but he always did! All through his education, you learned patience by watching him struggle, persevere, and then ultimately accomplish what he wanted to do. And then you saw the unbridled joy in his face when he finally got to say “I did it, Kis-ow!”
As you got older, you started to wonder about the fairness of it all. Why did Das have to struggle with so many things that came so much easier to you? Why would God make a child have to go through all that? Your struggles reached deep into your core and rocked you spiritually. You began to doubt in God’s existence altogether for so many years. Then, in what could only be described as a miracle, you began to see all the qualities that were always there but taken for granted. You began to see Das’ ability to love everyone unconditionally. You began to personally experience Das’ very real forgiveness whenever you messed up. You found that Das resembled God more than any other person you had ever met. It was then that you realized that you were the one born with one chromosome too few, and Das was born with just the right amount. You realized that God’s version of perfection was different than your own!
Hang in there, Kishore! God’s got quite a roller coaster ahead of you, and the exhilarating time is on the way! You are going to get a dream job where you will be able to indirectly give back to Das by directing a clinic for thousands of children with Down syndrome. You are going to impact the lives of not only those children but also their families and siblings, in ways that you could never have dreamed. You’re going to become President of the National Down Syndrome Congress and impact families all over the country and beyond. And after some struggles of your own along the way, you will hear yourself say, “We did it, Das!”
Sincerely,
Your Adult Self"
-Dr. Kishore Vellody, Medical Director, Down Syndrome Center of Western PA
We are jumping for joy at the chance to share our story. You see, what we are told by the professionals, and what is reality are as far as the north is from the south. So, we celebrate, giving out the facts and truths about our child. We hope our words encourage the parent walking into the unknown.
Four years ago, we went to the hospital to meet our baby girl and upon her delivery, you could hear a pin drop in the room. The recovery room was an extra long stop, followed by what we assumed was a normal removal of our baby to see her pediatrician. It was at that moment the nurse casually mentioned they were determining if Kamri had Down syndrome.
The next couple minutes or hours (time stood still) were quiet, followed by our Kamri, her pediatrician, and some head pediatric doctor or parent support member (I still don't know) returning with an apology that our baby girl had Down syndrome. Bloodwork would be back to confirm their findings in a couple days. Hearing multiple people (strangers and friends) say “I'm sorry” in those first couple weeks after Kamri was born, still fills me with emotion.
They informed us her needs would be many and the therapists and doctors would be there to assist us in any way with questions and concerns as they arose. Our pamphlets of information were plentiful (therapists to call, how to apply for the right insurances, genetic testing that we needed to get done, etc.).
To say the mood was of sadness is an understatement.
We were devastated. We didn't even know what to say to people when we announced her birth based on the day’s events. All we wanted to do was love our new baby girl.
But here's the kicker, our daughter is and was born perfectly healthy and able.
She had none of the health issues, such as heart defects, that can be associated with the diagnosis. Kamri is a 4 year-old beautiful girl who attends the same preschool her brother attended. She participates in gymnastics, dances and keeps up with her insanely active big brother - in addition to giving the best hugs! And she bosses her baby brother around just like a big sister should do. We will make sure she gets the same opportunities in life that everyone deserves – regardless of an extra chromosome.
Kamri has also made David and I appreciate every stepping stone we once took for granted with our son, and even our own lives. She deserved a party the day she was born, not a pamphlet and depressing words. She has single-handedly made me a better mom, wife and person. She personally brings laughter to our house with her pleasant attitude. And while I pouted about being home during early Covid days, she thrived and rejoiced that her favorite people now surrounded her on a daily basis.
Kamri was sent to us from God and we are super blessed to be her Mom and Dad. We wish we could change the feelings we experienced in the early days. Because I would not trade my sweet girl for anything! She, like many of her peers, only knows how to LOVE and has taught our family far more than we could ever teach her. We are "The Lucky Few." And I can't wait to see all she will accomplish in the future.
-Casi Hassey
Four years ago, we went to the hospital to meet our baby girl and upon her delivery, you could hear a pin drop in the room. The recovery room was an extra long stop, followed by what we assumed was a normal removal of our baby to see her pediatrician. It was at that moment the nurse casually mentioned they were determining if Kamri had Down syndrome.
The next couple minutes or hours (time stood still) were quiet, followed by our Kamri, her pediatrician, and some head pediatric doctor or parent support member (I still don't know) returning with an apology that our baby girl had Down syndrome. Bloodwork would be back to confirm their findings in a couple days. Hearing multiple people (strangers and friends) say “I'm sorry” in those first couple weeks after Kamri was born, still fills me with emotion.
They informed us her needs would be many and the therapists and doctors would be there to assist us in any way with questions and concerns as they arose. Our pamphlets of information were plentiful (therapists to call, how to apply for the right insurances, genetic testing that we needed to get done, etc.).
To say the mood was of sadness is an understatement.
We were devastated. We didn't even know what to say to people when we announced her birth based on the day’s events. All we wanted to do was love our new baby girl.
But here's the kicker, our daughter is and was born perfectly healthy and able.
She had none of the health issues, such as heart defects, that can be associated with the diagnosis. Kamri is a 4 year-old beautiful girl who attends the same preschool her brother attended. She participates in gymnastics, dances and keeps up with her insanely active big brother - in addition to giving the best hugs! And she bosses her baby brother around just like a big sister should do. We will make sure she gets the same opportunities in life that everyone deserves – regardless of an extra chromosome.
Kamri has also made David and I appreciate every stepping stone we once took for granted with our son, and even our own lives. She deserved a party the day she was born, not a pamphlet and depressing words. She has single-handedly made me a better mom, wife and person. She personally brings laughter to our house with her pleasant attitude. And while I pouted about being home during early Covid days, she thrived and rejoiced that her favorite people now surrounded her on a daily basis.
Kamri was sent to us from God and we are super blessed to be her Mom and Dad. We wish we could change the feelings we experienced in the early days. Because I would not trade my sweet girl for anything! She, like many of her peers, only knows how to LOVE and has taught our family far more than we could ever teach her. We are "The Lucky Few." And I can't wait to see all she will accomplish in the future.
-Casi Hassey
I stood in your shoes. I stood at the precipice of this life, my emotions engulfed in fear, grief, and uncertainty. I remember the congratulations and the welcomes from our community. I still felt uncertain and then I felt guilt for my uncertainty. I want you to know that everyone entering this unexpected path has felt what you are feeling. We were not sure we could do it, yet here we all are saying congratulations and welcome to you. There is a reason for that. We have the gift of perspective. I promise that you will have that gift someday. You will process this and when you do, you will come out the other side. Someday, you will be dancing alongside us with your silly socks at a World Down Syndrome Day dance. I promise this life is something you will want to celebrate.
Emotions are fleeting. Love is permanent. This child you have been gifted with is your baby and you will love him or her with a fierceness that will move mountains. You will become an advocate. As you settle into this role, you will learn about adults with Down syndrome living meaningful lives. Adults competing in Ironman triathlons, lobbying in Washington DC, acting in movies and television shows, and being celebrated for the people they are and the gifts they bring into this world. You will learn that emotional intelligence can take you far in life. You will see parents throwing parties when their children walk, talk, sit up, and everything in between, celebrating every milestone in agonizing detail because it warrants that reaction. You will have deeper friendships with other parents in this community. When you take away the pretense of perfect parenting, you connect with people on a more meaningful level. When you let your guard down and are given the opportunity to be truly vulnerable, the reward is a supportive lifelong community.
I would be lying if I said this path was easy. It’s full of mountains to climb and roads less traveled, but there is wonderment in this life. Hard work gives us an appreciation for things others take for granted. This journey turns life’s most ordinary moments into the extraordinary. My daughter, Sienna age 4, is sunshine, rainbows, and laughter. She has made us slow down and enjoy each day. When she was born, I found myself focusing too much energy on the future and unknowns. But Sienna in her wisdom, taught me that it was wasted energy. The truth is that none of us knows where ANY child’s life will take them. So now, we take it slow, enjoying each stage. We experience more everyday magic. I am so grateful to her for that welcome change in pace.
Sienna has forced me out of my comfort zone. She has made me take risks. Because of her, I started a blog that has been published by the TODAY show and ScaryMommy. Because of her, her 7 year-old sister and I advocated and fought for her rights in front of a US Senator. Because of her, he read my words on the floor of the United States Senate. Because of her, I have taken trips to Chicago, Phoenix, Nashville, and several trips to Harrisburg to connect with other parents in this community, each trip more meaningful than the next. Because of her, her sister has a front row seat to empathy and compassion. I can honestly say that Sienna has enriched our lives. She has made us better people.
Your child will do the same for you and your family. One day, you will stand in my shoes with a four year-old with Down syndrome, and you will be the one telling new parents that this life is worth celebrating. Until then, know that we have all felt what you are feeling and we are here to help you navigate it all.
-Shannon Striner
Emotions are fleeting. Love is permanent. This child you have been gifted with is your baby and you will love him or her with a fierceness that will move mountains. You will become an advocate. As you settle into this role, you will learn about adults with Down syndrome living meaningful lives. Adults competing in Ironman triathlons, lobbying in Washington DC, acting in movies and television shows, and being celebrated for the people they are and the gifts they bring into this world. You will learn that emotional intelligence can take you far in life. You will see parents throwing parties when their children walk, talk, sit up, and everything in between, celebrating every milestone in agonizing detail because it warrants that reaction. You will have deeper friendships with other parents in this community. When you take away the pretense of perfect parenting, you connect with people on a more meaningful level. When you let your guard down and are given the opportunity to be truly vulnerable, the reward is a supportive lifelong community.
I would be lying if I said this path was easy. It’s full of mountains to climb and roads less traveled, but there is wonderment in this life. Hard work gives us an appreciation for things others take for granted. This journey turns life’s most ordinary moments into the extraordinary. My daughter, Sienna age 4, is sunshine, rainbows, and laughter. She has made us slow down and enjoy each day. When she was born, I found myself focusing too much energy on the future and unknowns. But Sienna in her wisdom, taught me that it was wasted energy. The truth is that none of us knows where ANY child’s life will take them. So now, we take it slow, enjoying each stage. We experience more everyday magic. I am so grateful to her for that welcome change in pace.
Sienna has forced me out of my comfort zone. She has made me take risks. Because of her, I started a blog that has been published by the TODAY show and ScaryMommy. Because of her, her 7 year-old sister and I advocated and fought for her rights in front of a US Senator. Because of her, he read my words on the floor of the United States Senate. Because of her, I have taken trips to Chicago, Phoenix, Nashville, and several trips to Harrisburg to connect with other parents in this community, each trip more meaningful than the next. Because of her, her sister has a front row seat to empathy and compassion. I can honestly say that Sienna has enriched our lives. She has made us better people.
Your child will do the same for you and your family. One day, you will stand in my shoes with a four year-old with Down syndrome, and you will be the one telling new parents that this life is worth celebrating. Until then, know that we have all felt what you are feeling and we are here to help you navigate it all.
-Shannon Striner
“When we found out we were having a child with Down syndrome, we were extremely scared. We found out we were having Khalil before he was born, so we tried to mentally prepare ourselves. When I found out I was pregnant and they ran blood test, I got the Amniocentesis procedure and everything confirmed I’m carrying a child with Down syndrome. I was calm but petrified inside. I was told I can get an abortion while everything was still early. I was so mad the doctors even brought that word up to me, the feelings I had were unexplainable. After my water broke, I had an emergency C-Section I knew from that moment he’s going to give us a run for our money. Khalil was born at 36 weeks and considered premature. He was also born with two holes in his heart. Can you imagine my husband and my fear? He was in the NICU for what seems like forever. When Khalil was 6 months old the doctors decided he needed to have heart surgery. We couldn’t believe what we were hearing, but it was what was best for him. We had a tough beginning with our amazing son. Let me tell you something, it may not be the easiest raising a child with Down Syndrome, but Khalil has ended up being the best thing that ever happened to us. My husband and I talk about everything from the beginning to now and we just have happy tears when talking about it. We wouldn’t change anything! Khalil is amazing and a beautiful blessing to our family. He makes us laugh every moment of our lives. Taking life one day at a time, having patience and being thankful for all our supporters who loves Khalil as much as we do. Khalil has brothers, sisters, and he is loved by so many. We count our blessings! He’s funny, smart, intelligent, lovable and he brightens our days. We could not imagine life without our son!”
-Myleka Johnson
-Myleka Johnson
“I like to consider myself one if the extra lucky ones because many years before my son, Leo, was born I had a friend with Down syndrome. His name is Matthew. We became friends in high school. His happy go lucky attitude is what drew me in. His love for music and desire to find the good in others were two things that we could really bond over. High school years were not my best years but Matthew made them better. We even went to prom together, where he was crowned prom prince!
Fast forward to 7 years later. My husband and I received the news that our son has a 99% chance of having Down syndrome. That afternoon is a blur but I do remember my mind racing back to the time I spent with Matthew. I immediately I felt a sense of calm rush over me. Matthew was very loved and has the kindest soul. Two of the most desirable things you can wish for your child. I knew we would be ok and that this baby was meant to be ours.
Leo is 2 now. We've conquered more together than I ever knew possible. His heart surgery at 6 days old, close to 4 months in the hospital, a feeding tube, just to name a few. Those tough times have given us a stronger bond than most. Besides all of that, these last 2 years have been the most incredible years of my life. He see's the world differently than most, in a beautiful way. You can feel his magic by being in his presence. His wide smile and sparkly blue eyes are enough to see that this boy is a true light. His extra chromosome is so special to me. I believe it allows him to see and feel with a heart of pureness and love like no other. It's hard to put this kid into words because he's just that good. He is everything.”
By: Alexa Jaques
Fast forward to 7 years later. My husband and I received the news that our son has a 99% chance of having Down syndrome. That afternoon is a blur but I do remember my mind racing back to the time I spent with Matthew. I immediately I felt a sense of calm rush over me. Matthew was very loved and has the kindest soul. Two of the most desirable things you can wish for your child. I knew we would be ok and that this baby was meant to be ours.
Leo is 2 now. We've conquered more together than I ever knew possible. His heart surgery at 6 days old, close to 4 months in the hospital, a feeding tube, just to name a few. Those tough times have given us a stronger bond than most. Besides all of that, these last 2 years have been the most incredible years of my life. He see's the world differently than most, in a beautiful way. You can feel his magic by being in his presence. His wide smile and sparkly blue eyes are enough to see that this boy is a true light. His extra chromosome is so special to me. I believe it allows him to see and feel with a heart of pureness and love like no other. It's hard to put this kid into words because he's just that good. He is everything.”
By: Alexa Jaques
“Congratulations! That's something I truly needed to hear and you deserve to hear it too....I mean you did just give birth and bring a little person into this world! The first month you will have all the feelings....sad, mad, happy, apprehensive....and dive into all of them. Why not be mad and sad? This was possibly an unexpected route change on your parenting path to a potentially terrifying unknown destination. But don't forget the absolute joy of having a smiling happy life who you get to mold and love on. Month two I started settling into this journey, meeting people on social media and learning I wasn't alone. Your rockin’ tribe is one of the best resources because they truly understand your joy and your tears. We all have that "what am I going to do?" story. They understand our milestone celebrations when they aren't on the typical timeline. Lastly, you are going to be a superhero parent, you will be an advocate, a teacher and all these amazing qualities that come from being a mom to a child with Down syndrome. So give yourself grace because your power is loading up and you will be amazing.”
-Nicole Scott
-Nicole Scott
